need urgent advice , please help - British Liver Trust

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need urgent advice , please help

Eternity6 profile image
8 Replies

I have autoimmune hepatitis for several years started coming down from pred and got down to 1mg then 18 days ago got covid it’s flared liver inflammation and my specialist told me to go up to 10mg straight away for 7 days which I have, told me to keep in touch I’ve phoned hosp and haven’t had a phone call back left message with his secretary im so worried as I’ve finished the 7 days of 10mg. And tomorrow I do what I’ve no answer and I don’t know what to do. He just said you can then go down but in what dose. I was expecting him to contact me but he hasn’t, I need advise I’m so worried what dose do I take in the morning is it safe to go straight to 1mg or do I taper down from 9mg and for how long, I’m on azathrioprine 50 mg which I take everyday also.has anyone had to do this!

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Eternity6
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8 Replies

I also have AIH and my specialist is having me taper very slowly. Keep trying to contact your Doc, only he can direct you. But I'd say it's safer to assume you taper as directed before, until you can get ahold of your specialist. Just because drastic changes in med dose can have negative effects.

Eternity6 profile image
Eternity6 in reply toPatient0Transplant

yes I’ve been trying to contact my specialist but he’s not got back to me so I don’t even know if he received the messages left, I will be contacting 111 tomorrow morning as I need to know what to do. Yes I know what you mean I don’t want to have any negative affects and make things worse

sophiaS1980 profile image
sophiaS1980 in reply toEternity6

Can you just find another doctor, i wouldn't put up with a doctor that didn't return my call. I hope things get better.

Eternity6 profile image
Eternity6 in reply tosophiaS1980

thank you , I’ve never ever had this happen before, he’s a brilliant specialist normally I’ve always been 100 per cent happy with him I wouldn’t change him tho

Mille23 profile image
Mille23

I too had a flare in my AIH, in august, 22, and I had to take prednisolon 10 mg together with the usual dose of Azathioprin 50 mg. I had 10 mg for 3 weeks, went down to 5 mg , for one week, now I am on 2,5 mg. I am going to have blood test ultimo February, that will decide, if I can stop with prednisolon. It takes time to taper down in prednisolon. And always according to doctor’s prescription. In your case, I would keep on with 10 mg, until you have talked with your doctor. Hope the best for you.

Eternity6 profile image
Eternity6 in reply toMille23

to be honest I don’t think I dare just carry on with 10mg he said only 7 days, and then you can go down as you need to boost your steriods up, then can come back down but how and at what dose I don’t know but fingers crossed I get advice from out of hours dr soon for which I will be very grateful

exy21 profile image
exy21

Hi you do need to talk to doc or specialist. Mines usually is go down to 5 daily for a week then every other day and then stop. But you were still on 1mg so you'll need to know how much to stay on. I'm only on it for flares. Can't tolerate it otherwise. I'm on 75mg azathioprine. Been on it 17years.

Eternity6 profile image
Eternity6 in reply toexy21

yes I’m very aware I need to speak to my dr the health centre is closed I’ve been contacting 111 from early this morning they are trying to contact an out of hours dr I’m still waiting to hear two hours later from someone sadly though they are so busy aren’t they, hopefully he will advise me as to what to do. I e also had autoimmune hep for I think mines 15 years now, I was doing well as I got down to 1mg was due to come off it last weds but I caught covid that obv put the cat among the pigeons and had to have pred raised up to 10 mg for seven days. So being 8th day now I’m in limbo as no one has got back to me from the hosp when I rang up twice to tell me what to do, and still waiting to hear from out of hours dr, I’m due for blood test on Monday to see what’s happening hopefully the inflammation has come down I’m still not feeling right though and not able to go outside not well enough no energy, but keeping positive, thanks for replying x

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